After six ultra scans, due to a little bleeding and feeling unwell during my pregnancy, doctors and nurses told me that both my baby and me were under weight, they advised me to eat more healthier food ?????

One 6^th October 1994, I gave birth to my daughter Yasmin. Yasmin was born with a part of her left leg missing, her leg was half the length it should be and her foot was where her knee should have been. Though I did not know at the time the condition she was born with is called Proximal Focal Femoral Deficiency, which, in non-medical terms, means that a large part of the upper thigh bone and hip are simply not there.

The emotional trauma at the time of Yasmin's birth was made worse by the fact that no-one was prepared, least of all me. The whole event was horrific and I am sorry to say that my first reaction towards Yasmin was one of rejection because I was so scared of what she might look like. My Mum held her while the nurses checked me over. I was still unable to hold my daughter. I remember my mum was in tears the whole time she held Yasmin; instead of being a happy occasion it was a very sad one.

Later my mum took me for a bath. She left me on my own for a second and when she came back she found me still in my hospital gown, in the bath just sat there rocking backwards and forwards, saying .........'Why me?'.

In my medical reports it tells me what was wrong with Yasmin from the day she was born, but I cannot actually remember anyone telling me. I do remember the doctors and others talking between themselves but that I was not included in their discussions. The medical terminology was so freely used it created an invisible barrier and hindered my communication with those taking care of my baby. On many occasions I felt compelled to interrupt and ask questions.

After a brief period I did eventually bond with Yasmin and opted to breastfeed her. As you can imagine it was a very emotional time for me and all my family. I was pleased to be informed that there was [otherwise] nothing wrong with Yasmin and after a long week we were discharged and could return home.

My first reaction to being home was fear that I would not be able to cope, I was existing in a dream-like state. As I look back now I believe I was still in shock, later other emotional problems began to affect me. I felt anger towards people who kept asking questions about Yasmin and people staring began to get me down.

I eventually decided that I needed to research Yasmin's condition to learn as much as I could about it in order to support her as she grew. I went to my local Library and explained to the Librarian what was wrong with my daughter and asked her where I could get any information from. She contacted The British Library Document Supply Centre in Wetherby, West Yorkshire and within two weeks I at last had medical information on my daughter's condition.

It was a fantastic feeling but still an upsetting time as I was a single parent, feeling very alone.

Yasmin was fitted with her first artificial leg at the age of one; from the Newcastle Freeman Rehabilitation Centre. The staff there were very supportive and understanding on every visit we made. The day my mother and I went to collect Yasmin's new artificial leg, I had a feeling of anxiety and panic and I was devastated when I saw it for the first time. It looked horrible and plastic. Yasmin cried when it was first fitted but eventually kept it on and later walked slowly with a frame, gradually getting better until she was able to walk slowly on her own though falling now and again. It was all very sad.

I found it hard to deal with the way Yasmin's artificial leg looked and found myself dressing her in long dresses to completely cover her leg. I found it hard when I went shopping. It would always be a struggle to sit Yasmin in the shopping trolley seat. Yasmin's artificial leg would not bend and would get stuck in the trolley and I would have to take if off to free her from the trolley seat. As you can understand Yasmin would get very upset, crying and screaming, which draw people's attention and stares. I would just cry, no-one would ever offer to help.

By the time Yasmin turned two, we were living in York where Yasmin attended the Chapel Allerton Rehabilitation Centre, Leeds. Again due to my research a meeting was arranged for me to meet Mr B W Scott, a surgeon. It was decided that the best way to proceed was for Yasmin to have the foot of her left leg removed. The operation took place in September 1997 and was a complete success. It was a decision I will never regret making. It allowed Yasmin to move more freely. Her artificial leg had a total knee joint making it possible for Yasmin to bend her left leg and walk a lot straighter. It was something to be celebrated as it would not have been possible for her to do this if her foot had not been removed.

We had a few problems with Yasmin's artificial leg mechanically, and also because Yasmin was getting older, the cosmetic appearance of the leg was also becoming an issue. I felt very alone there and felt that there was no support for Yasmin and me and eventually communication between Yasmin's doctor and I broke down and I asked for a transfer to the Sheffield Rehabilitation Centre. By this time I was engaged to be married and had moved to Barnsley. There were a lot of good changes happening in our lives.

Yasmin's foot on her artificial leg would often come loose or just fall off. Her knee would collapse causing Yasmin to fall over and hurt herself. Her right knee was permanently scarred due to her falling. Her stump became very sore due to the socket not fitting correctly and she continuously suffered from a rash around her knee and stump due to an allergic reaction to the material the socket was made of. All these on-going problems began to affect Yasmin emotionally and she began to lose the confidence and self esteem that had taken her years to build. I eventually had to give up my job because of all this which again isolated me.

Yasmin was now eight and the cosmetic side was very important to her in the way she looked; fashion had a big influence on her and as a parent I wanted her to look nice and fit in with all the other girls at school. I was also fully aware of the name-calling Yasmin had to deal with e.g.:- 'One legged freak' or 'hop along'. The list of names is too long to include here.

Yasmin's artificial leg was very wide at the top and always caused problems when trying to find clothes to fit her and when we did, the leg tended to tear or cut the clothing, meaning that something new only lasted two to three wears. It is also important that the shape of the leg is made to look and to measure in width as much as to the likeness as her right leg as possible. Her artificial leg would either be thinner or fatter, never the same as the right leg. Also Yasmin would sometimes have to wear what can only be described as old ladies tights which were provided by the hospital. They looked terrible, so when the other children wore shorts in the summer, Yasmin would wear trousers even when it was red hot. It was a difficult time, but, thank God, it's over.

At the time all these problems were going on I contacted steps, BDF Newlife and The Lady Hoare Trust.

We were contacted by Mrs. V Simpson, a field worker of The Lady Hoare Trust. I found her to be very supportive and she helped me a lot. It was through her I found out about and contacted Peggy and Friends who advised me to go to the Birmingham Rehabilitation Centre and asked to refer Yasmin to the Principle Prosthetist, Mr Andrew Sharpe. The process took longer because I was ill at the time suffering from stress and migraines and I took a back step because of it. I do not know who was to blame but I will never again take a back step. We eventually got there and I have to say of Mr Andrew Sharpe that I knew somewhere this man existed and he does. Every time something went wrong with Yasmin's artificial leg I wished I could meet someone who would care enough to take all Yasmin's problems away. Previously, every time I have collected Yasmin's leg, I had cried alone in despair, because it looked nothing like her right leg.

All the added mechanical problems and the cosmetic side are now a thing of the past, because of Andrew. He puts himself in the same position as a parent who is grieving and only wants the best for their child. He puts himself in the same position as a child or adult who just wants to walk and look the same as everyone else.

When we visit Andrew, Yasmin sees a physiotherapist called Melissa on every visit and there is also a counsellor available to speak to anytime, which a brilliant idea and should be available in every hospital.

Eight long years it has taken me to find Andrew. He has completely changed all our lives. Yasmin's leg is not the huge problem it was anymore it is just a part of our lives. She has her good days and bad ones but this is caused by name-calling more than anything else.

To see your child fitted with an artificial leg and see her walk tall and smile because she is happy with it. To see your daughter's face when she rides a bike for the first time is a moving moment and one I will never forget. She walks straighter now than she ever has and is bursting with confidence more mow than she ever was. It is a huge achievement and we owe a big thank you to Andrew Sharpe.

I have never given up looking to find a surgeon who would make a difference to improve my daughter's disability and improve her way of life and eventually it has paid off. I heard about Mr J Fernandes (Consultant Paediatric Orthopaedic Surgeon) from Vicki Simpson of The Lady Hoare Trust. On 3^rd February 2004 Vicki wrote asking for a meeting. Eventually we had a couple of Consultations and Yasmin went into hospital and had a camera fed into her leg so the Doctor could see where her muscles and fatty tissue were etc. She later had a cat scan and some x-rays. Dr Fernandes knows a lot about PFFD which is so reassuring, he has been very supportive and very kind in helping us decide what it is in Yasmin's best interest. Dr Fernandes has discussed different options about the structure of Yasmin's leg with surgeons from Russia and America and kept in touch with me to let me know what he is thinking.

We have now decided that it is in Yasmin's best interest that she has her left knee removed and her short Femur and Tibia fused together to make one long bone. She will have the operation on 23^rd March at the Sheffield Children's Hospital and will be in hospital for approximately one week. She will have a fixator or frame on her short leg, which I believe will be on for five to six months this will help Dr. Fernandes stay in control of her leg from the outside while it is healing as well as improve the function and help the Tibia and Femur heal correctly etc. I do not know exactly when she will be walking again but I think Christmas 2006 would be a realistic guess.

The Hospital have been very supportive and we are just getting organised and prepared with adaptations, schooling and local help from the Barnsley Hospital as well as redecorating Yasmin's bedroom.

I am finding all of this very hard to deal with as I feel again that this is all my fault, but when the surgery and treatment are completed she will walk straighter and things will be better for her as she grows into adulthood.

Yasmin is feeling confused and scared about this path we are now taking. She has been through a lot during her young life and has been a very strong and determined little girl. She is a fighter and we are very proud of her.

Update March 2007

Yasmin's femur and tibia were fused using a metal plate with pins, she was walking by July and did find learning how to walk again extremely upsetting, l would advise counseilling , and also do not push them too hard to wear their new leg and walk. Yasmin is walking a lot straighter now, but anyone thinking of having this operation, it takes time, even l thought l had made the wrong decision when she tried her new leg on the first time, l expected Yasmin to just put her leg on and be off, it does not happen like that, it\'s a long emotional journey. Yasmin got up one morning and just put her leg on, same as riding her new bike - she just went outside and got on it.

She is a happy child, but name-calling and being unable to wear some fashions and certain shoes does get her down sometimes, also her limitations with eg dancing, hockey and netball at school upsets her a lot.

She is an incredible child. She won the Douglas Bader Award on the 8th December 2006, an emotional evening, we are all so proud of her, she has been through so much.

Mrs M Senior

HEALTH AND WELLBEING: Vanessa's right to walk and run

This article originally appeared in the Daily Telegraph in 1999.

An encouraging development in surgery for children born with a shortened limb has raised the hopes of Emma Burns. By EMMA BURNS

Fourteen hours after our daughter Vanessa was born at home, a GP arrived for the routine post-natal checks. I had fed Vanessa, bathed her, changed her nappy, thanked God for her and held her as she slept. So I was confident as well as exhausted as I lounged on the bed, watching the GP examine her in the late afternoon sunshine. Downstairs, my husband, Stephen, played with our 16-month-old son, Elliot, and chatted to my parents.

"Oh, look, her left femur is a bit short," the doctor said suddenly. The midwife, who was standing alongside him, nodded in agreement.

"What does that mean?" I asked calmly. They didn't know; they had never seen anything like it before. In soothing tones, the GP murmured something about seeing a specialist for a scan, probably in London.

I didn't feel worried as I carried Vanessa downstairs to be admired. We unwrapped her, pored over her and decided we could see nothing wrong. The midwife, who knew better, came back with a phone number for steps, the charity for children with lower limb abnormalities. We had just become one of the 26 or so families in Britain each year to have a baby with a limb reduction defect.

Vanessa has a proximal focal femoral deficiency. That means she has a small and shallow hip, short thigh, missing knee ligaments and a slightly short lower leg. It is a developmental problem: the blood supply in her leg did not form properly in the early weeks of my pregnancy, possibly because the signalling cells did not switch on at the right moment.

At just five weeks, Vanessa was strapped into a special harness that held her legs up and outwards so the femur was pushed into the hip joint. She wore it for three months. Her hip is now stable but, without surgery, her left leg, which was one centimetre short when she was born, is forecast to be a crippling 12-15cm short when she is fully grown.

Vanessa's first few weeks were a whirl of frustrating hospital appointments, during which we found out very little. It took both Stephen and me to pin her scrawny little two-day-old body down on the X-ray plate, and we wept over the unarguable proof that her left thigh bone was only two thirds the length of the right one and bent. Strangers, spotting the harness, would ask: "What's wrong with the baby?" It was only when we called steps that we were given sensible, straightforward information by sympathetic listeners.

They told us about leg lengthening, a terrible process whereby the thigh is cut through in the middle and pins screwed through at both ends. These are attached to a frame, known as an external fixator, and must be turned every day to create a tiny gap, which the bone grows to fill. The sites where the pins enter the skin are raw, prone to infection and must be cleaned daily despite the pain. The frame stays on for up to a year or more while the bone grows and then heals.

Problems are created not so much by lengthening the bone, but by stretching the muscles and blood vessels. This causes pain and stiffness, and sometimes dislocation of the knee.

The worst moment came during our appointment with the orthopaedic consultant at Great Ormond Street Hospital for Children. He told us he would not lengthen Vanessa's femur more than once, or by more than 5cm, because, in his experience, children who had repeated operations ended up with knees so stiff they could not walk. That left two options: either he could lengthen her lower leg (leaving her left knee much higher than her right), or he could amputate her foot and fuse her knee so that a false lower leg and knee joint could be fixed on to the stump. He seemed surprised when I looked at my tiny baby and burst into tears.

That weekend was unbearable; the choice seemed impossible. Either we put Vanessa through a protracted procedure, with all its pain and disruption, just for her to end up with legs that were a mess, or we let them amputate her perfect, beautiful little foot. And all because of a discrepancy that, at this stage, was still less than half an inch.

Then I remembered that steps has strong links with the Sheffield Children's Hospital. Blinded by the southerner's prejudice that Great Ormond Street must be best, we had not realised that Sheffield is the primary centre of excellence in Britain for leg lengthening and was the first place in the country to open a special limb-reconstruction unit.

Prof Mike Saleh, who runs the unit, is probably one of the top five surgeons in the world in this area. He and his team have carried out almost 800 lengthening operations since 1985. On the long train journey, we psyched ourselves up to hear that he, too, believed amputation was the answer. But no - he was happy to carry out repeat operations on Vanessa's femur, gaining perhaps 3cm each time.

The affected leg would be thinner, and her knee would not bend as well (she would not be able to run as an adult), but she would have two functioning legs that were her own, within 1-2cm of each other in length.

Elated, we set about changing our lives in anticipation of these yearly operations, to begin initially after Vanessa's second birthday and continue until she is seven, and then again from age 10 to 14.

We moved 150 miles from our home in Sevenoaks, Kent, to be closer to Sheffield, investigated sympathetic schools, and bought a house with a downstairs bedroom and bathroom. At 16 months, in special shoes with a 3cmlift, Vanessa walked. Now, almost two and a half, and with a 5cm discrepancy, she runs, jumps, dances, walks on tiptoe and up and down stairs - and scrambles up the climbing frame faster than her brother. As I watch her beaming at everyone she meets, revelling in hospital visits because they give her a chance to charm more people, and screaming outrage if she is thwarted, I know she will cope with whatever comes her way.

But we have even more reason for hope. Next year, Sheffield might become the first children's hospital in Britain to use what seems to be a greatly improved device, an internal fixator called the Albizzia nail. Prof Saleh has recruited its inventor, French surgeon Jean-Marc Guichet, to work in Sheffield for at least two years, so he and his team can evaluate the technique and familiarise themselves with it.

The Albizzia nail is a telescopic tube with a ratchet inside. It is inserted down through the bone marrow after the femur has been cut in half from the inside with a special saw. After it has been screwed in position, the patient is taught to work the ratchet by movements of the lower leg, lengthening the bone by 1mm a day. The required length is reached after two or three months, but the rod is left in place for a year while the bone heals.

The device has disadvantages. It can be used only when the child is fully grown, aged 13-plus, and it requires at least one hour and preferably four hours of physiotherapy every day for 15 months. Such intensive physio would be extremely disruptive to any child's education - and it is simply not offered in Britain. (Even children with external fixators need more physio than they get here.)

During the months of leg-lengthening, the child is still on crutches or in a wheelchair, though that will not be necessary if a computer-controlled version is developed. While waiting for surgery, the child must wear an enormous boot, with a 10cm lift, which might itself cause problems as thebody deforms to compensate.

The advantages are that there are no pin sites to clean; no hurry to get the device off before the bone is properly healed; no cold, bulky frame to disturb sleep; far less risk of the bone bending as it grows - and the huge amount of physio means the leg should eventually look and work much like a normal one. Best of all, it requires far fewer operations.

If the Albizzia nail turns out to be the answer for Vanessa, her childhood will be almost normal and she will grow up able to walk, run and dance on her own two feet. We could want for nothing more.

17 January 2006 update: Vanessa is now nine, with a discrepancy of just over 6.5cm and since Professor Saleh left Sheffield for Norwich two years ago, has become a patient of Mr Fernandes. The current forecast for her discrepancy at maturity is 8cm: we have been very lucky. Perhaps the cranial osteopathy she has had every few months since she was a baby has also helped. She has had no operations so far and we still want her to have nail lengthening, probably at 14 and 16, preferably with an Albizzia nail as that allows for more physio which seems to make a difference to the results. Mr Guichet has moved back to Marseilles where we have been to see him. His website is www.allongement-os-grandir.com. He seems to be operating successfully on PFFD patients. We feel very lucky that Mr Fernandes approves of nails and wants to carry out some nail lengthenings himself quite soon. (Although I was over optimistic in my expectation that nails would be in use in Sheffield in 2000 - as far as I know, only one teenager with PFFD has so far had a lengthening with a nail in the whole of the UK.)